“Non-Stereotypical Presentations” of Autism in Late-diagnosed Adults

⧖ 9 minute read, 1800 words

“The biggest threat to the human intellect isn’t being ignorant, but being under the illusion of knowledge.”

Most research and stereotypes of autism relate to how it presented or was historically viewed in autistic males. However, many women are also autistic, though it can present differently perhaps due to gender norms and how young girls are (usually) socialized in western culture. Historically, many women’s health issues have been minimized, misdiagnosed, and dismissed; see here, here, or here for background reading. The less social privilege you have, the more likely your experiences are to be marginalized in most of the world’s healthcare systems.

See the 2021 videos here by Samdy Sam and Purple Ella for additional perspectives on this subject. Both of these Youtube creators identify as autistic and are well known in the community. Calling this broader understanding of autism “non-stereotypical” feels strange; it may be more accurate and helpful to consider an alternate conceptualization of autism, rather than simply labelling it as a “female presentation of autism.” This alternate view recognizes a presentation of autism that is characterized more by internalization, extensive use of social masking, interests that may align more closely with those of their peers of a similar age and gender, and a socialization process that emphasizes agreeableness and refined social skills to avoid punishment. Moreover, individuals with this presentation of autism are more likely to have superior language skills and average or above-average IQ. By understanding and acknowledging different autistic presentations, we can ensure a more comprehensive and inclusive approach to assessment and therapy.

“Non-stereotypical” variations of autistic traits have been defined and are useful to many people; see Samantha Craft’s work for one explanation. Samantha later updated that list and acknowledged that thousands of people across the entire gender spectrum have identified with this list. Therapists could think of this as a common but non-stereotypical presentation of autistic characteristics, a non-medicalized perspective. This is the kind of presentation that is more likely to be dismissed by healthcare professionals, I think.

Between how differently autistic characteristics can present (perhaps especially in people who were assigned female at birth (AFAB)) and how often the medical system dismisses their concerns, neurodivergent people are under-diagnosed and misdiagnosed frequently. A lifetime of being treated this way by doctors and therapists leaves many marginalized people less likely to seek help, feeling timid, anxious, or even defensive when they do speak with healthcare professionals. The term ‘medical trauma’ addresses this and is something neurodivergent adults may struggle with.

The following is an excerpt from Devon Price’s excellent book Unmasking Autism:

There’s a significant problem with the concept of “female Autism,” though. It’s a label that doesn’t properly account for why some Autistics mask their Autistic qualities, or have their needs ignored for years. First, not all women with Autism have the “female Autism” subtype. Plenty of Autistic women visibly self-stimulate, struggle to socialize, and experience meltdowns and shutdowns. Autistic scientist and activist Temple Grandin is a great example of this. She speaks in something of a monotone, avoids eye contact, and even as a young child craved sensory stimulation and pressure. Though she’s very visibly and typically Autistic by today’s standards, Grandin was not diagnosed until adulthood.

Autistic women aren’t overlooked because their “symptoms” are milder. Even women with really classically Autistic behaviors may elude diagnoses for years, simply because they are women and their experiences are taken less seriously by professionals than a man’s would be. Additionally, not everyone who has their Autism ignored and downplayed is a female. Many men and nonbinary people have our Autism erased, too. To call the stealthy, more socially camouflaged form of Autism a “female” version of the disorder is to indicate that masking is a phenomenon of gender, or even of assigned sex at birth, rather than a much broader phenomenon of social exclusion. Women don’t have “milder” Autism because of their biology; people who are marginalized have their Autism ignored because of their peripheral status in society.

When an Autistic person is not given resources or access to self-knowledge, and when they’re told their stigmatized traits are just signs that they’re a disruptive, overly sensitive, or annoying kid, they have no choice but to develop a neurotypical façade. Maintaining that neurotypical mask feels deeply inauthentic and it’s extremely exhausting to maintain. It’s also not necessarily a conscious choice. Masking is a state of exclusion forced onto us from the outside. A closeted gay person doesn’t just decide one day to be closeted—they’re essentially born into the closet, because heterosexuality is normative, and being gay is treated as a rare afterthought or an aberration. Similarly, Autistic people are born with the mask of neurotypicality pressed against our faces. All people are assumed to think, socialize, feel, express emotion, process sensory information, and communicate in more or less the same ways. We’re all expected to play along with the rules of our home culture, and blend into it seamlessly. Those of us who need alternate tools for self-expression and self-understanding are denied them. Our first experience of ourselves as a person in the world, therefore, is one of being othered and confused. We only get the opportunity to take our masks off when we realize other ways of being exist.

Autistic people with “non-stereotypical presentations” have that belief dismissed by family doctors frequently. Many psychiatrists and therapists tend to be dismissive toward autistic women. Though the stigma toward autism is reducing, it’s still difficult or uncomfortable for some people to admit the possibility that they are autistic, even to a healthcare professional, which makes it even worse in the times when those professionals respond poorly. Further, it’s tragically common for a doctor to respond confidently despite their ignorance. For example, see this anecdote from a woman in her late 20s who suspected she was autistic so decided to work with a psychiatrist:

An organisation helped me and donated to afford a meeting with a psychiatrist, they even helped me choose the doctor. I was so scared and excited, I decided to write everything down to help myself through the process. I spoke about my childhood, my sensory issues, my troubles with socialization, synesthesia, special interests, meltdowns etc. He stopped me and said that I can't be autistic because I have empathy and a boyfriend that I love and want him to love me back. The psychiatrist added then that autistic people don't care about love and can't be empathetic. I was shocked and I was asking questions trying to understand his point, I was exhausted after that meeting. I don't think that he is right and he probably needs to learn more information about everything, but I am still confused. I read a lot of information before this meeting (5-6 months were spend to learn more about autism and myself).

This is painful to read and I wish I could believe it was rare or that it happened 50 years ago. But in happened in 2021. Here’s another example from early 2022. I see this in the autistic community all too regularly. Many people experience this type of dismissal from healthcare professionals who are supposedly experts in mental health—psychologists, psychiatrists, MSWs, LCSWs, etc. Add in a broader version of white coat syndrome, and this kind of rejection surely leads many people to hesitate or stop seeking help, at times experiencing medical trauma.

When autistic women were asked about therapy and what they’d wish therapists understood, they explained things such as:

  • “Try to listen to someone suggesting autism to you with an open mind. We have trouble communicating, so while we may have done proper extensive research, our presentation of it can still come off as thin, stuttery, lacking, unconvincing, etc…I had my suggestion of autism dismissed four separate times yet I am now officially diagnosed”

  • “My struggles may be invisible, but they are valid. Just because I appear neurotypical does not mean I am. If I tell you about a struggle I have please do not invalidate me by saying ‘everyone deals with that’ or ‘but you can’t be struggling that badly; you have a college degree.’ Please, just validate my experiences”

  • “I want you to know that I have a high school diploma. A vocational degree. I have a high IQ. I raised a son into adulthood. I can hold conversations. I feel empathy. But that doesn’t mean I don’t struggle. I’m still socially awkward….I present well. I mask well. But that doesn’t mean I struggle less. Don’t write us off just because we can be successful”

As with any misunderstood or marginalized group, it’s best to hear directly from voices within that community. The above quotes are more authentic and moving than anything I could have written. I hear these concerns over and over from neurodivergent people. It’s tragic.

A 2014 study explored differences between autistic males and females. The sample was children aged 4 to 18, with 304 females and 2114 males. Interestingly, they found that for participants with IQs above 70, the most pronounced difference between autistic boys and girls was that girls were less likely to have restricted interests. Girls’ interests were still restricted somewhat, but often their interests were more ‘socially appropriate’. For example, while an autistic boy may talk at length about train timetables, an autistic girl may go on about their favourite singers or a makeup collection. Autistic girls may also be less likely to be interested in repetitive behaviour than boys. Another study found that autistic girls consistently had superior social skills when compared to autistic boys, though the autistic girls did score lower when compared to neurotypical girls.

Effort is being put into creating more accurate screening tests for detecting autistic characteristics in women. A 2020 study of the utility of a modified version of the Girls Questionnaire for Autism Spectrum Condition (GQ-ASC) yielded promising results. Broadly speaking, this screener looks at 5 categories:

  • Imagination and play

  • Social masking of autistic traits

  • Sensory sensitivities

  • Socializing (barriers to understanding and participating)

  • Interests (age-advanced and non-stereotypically feminine interests).

This screening test correctly identified 80% of cases, which is excellent.

Lastly, there hasn’t yet been enough research on autism outside of cisgender folks. Recent research is beginning to consider this question, such as this study from 2020, that found “substantial overlap between autism and transgender identity.” I imagine quite a bit more research in this and related areas will be done in the coming years. It seems that the less privilege a person has in a society, the more likely their experience or suspicion of being autistic is to be marginalized and dismissed in the healthcare system.

Overview of some more related research:

  • This 2020 paper examined data from about 640 000 people and reported that “compared to cisgender individuals, transgender and gender-diverse individuals have, on average, higher rates of autism, other neurodevelopmental and psychiatric diagnoses. For both autistic and non-autistic individuals, transgender and gender-diverse individuals score, on average, higher on self-report measures of autistic traits, systemizing, and sensory sensitivity, and, on average, lower on self-report measures of empathy.” Empathy was measured here by the Empathy Quotient-10 (EQ-10)

  • This 2018 paper reported that from their sample of about 650 people, based on Autism Quotient (AQ) results, “transgender and cisgender people reported similar levels of possible autistic caseness. Transgender people assigned female were more likely to have clinically significant autistic traits compared to any other group”

  • This 2019 paper reported, that autistic individuals “were over-represented in both the transgender and nonbinary groups. The key variables differentiating the transgender and nonbinary groups from the cisgender group were systematising and empathy.” They give some clinical suggestions that seem problematic and insensitive, so I’m not supporting this paper, just pointing out its existence. One reasonable suggestion that they make is “Clinicians treating transgender and nonbinary individuals, should also consider whether clients, especially those assigned female at birth, have undiagnosed” autism. I think this possibility is important for therapists to keep in the back of their mind for basically any client—particularly anyone with burnout, depression, anxiety, difficulty with emotional regulation, executive functioning concerns, or sensory sensitivities.

  • This 2021 paper is a bit more tangentially related to autism, but it’s interesting and ultimately they suggested that “Executive function (EF) underlies broad health and adaptive outcomes…Given the importance of EF skills for multiple outcomes, and the unique and additional EF demands specific to transgender youths’ experiences, EF skill monitoring—and when appropriate, supports—should be considered for transgender youth.”

  • This 2021 paper tried to parse out similarities and differences in experiences of a variety of NT and ND groups, suggesting that “autistic-transgender adolescents experienced significantly greater internalizing symptoms compared to allistic-transgender and autistic-cisgender groups,” that difficulties with executive functioniong and socializing were “associated with worse mental health,” and that “Comparing across all [autism] and gender-related groups, female gender identity was associated with greater suicidality.” Here, internalizing symptoms means generally keeping struggles to yourself rather than sharing them and seeking support (which people hesitate to do for all kinds of reasons: past trauma, criticism, don’t feel safe to share, overwhelmed, alexithymia can confound this at times, etc.), so things like sadness, loneliness, withdrawing, irritable or nervous when stressed/emotional, not wanting to communicate, sleep difficulties, negative self-talk, and so on.

  • This 2022 paper is a systematic review from the stance of social justice, describing itself as being “influenced by theories of intersectionality, performativity and gender hegemony, this review sought to explore the intersection of autism and gender in qualitative research into autistic identity.”

I look forward to more research being done in this area in the coming years.

Conclusion

It’s important to keep in mind that many autistic adults are so effective at masking that few people (if anyone) would suspect that they are autistic. If a person is suggesting to you that they may be autistic, listen to them and earnestly explore the possibility. The dynamic interplay of gender, societal norms, and the healthcare system significantly impacts the diagnosis and understanding of autism, particularly in underrepresented groups. The acknowledgment of these factors is critical to ensure more accurate diagnoses and effective support for all autistic individuals, regardless of their gender identity. Moving forward, it is essential that we challenge the stereotypes and biases entrenched in our healthcare systems and societal norms. The lived experiences of autistic people should guide these changes, fostering a more nuanced understanding of autism that encompasses its various presentations. It's crucial for healthcare professionals to approach each case with an open mind, taking into account the individual's unique experiences and struggles. This will not only result in more accurate diagnoses but also empower autistic individuals, thereby creating a more inclusive and understanding society.

~Iain